Right before the rug was pulled out from beneath us!

Sunday, January 22, 2012

What I've been waiting for...

 Today my heart is jumping for joy. I can't even describe what this day means to me... it is the day I've been waiting for. Today, Jake attended my nephew's birthday party. ( Happy Birthday Chasen.. which is exciting but that's not what has me beaming)  Last night we were still undecided if Jacob would attend, however after much thought about protection and the risks, Jake decided he wanted to go.....He decided it's time to live.... Did I mention it was a paintball party? This kid who had open heart surgery 53 days ago was playing paintball today like a pro...
ok .. maybe not like a pro.. but not like someone too tired to do anything fun.. I can't even tell you how excited I am that he was able to play. Two months ago this would not have been possible. Two months ago he didn't have the energy to stay awake let alone play paintball.
Today my son is enjoying life... WOOHOO!  Today my heart is jumping for joy.  I'm so happy I could cry.... ok..ok.. so happy I did cry.

Saturday, January 7, 2012

Check up

Wow. I didn't realize it had been so long since I had updated, Quick recap...  When we went back for the recheck hoping they would release us to fly home, they instead, re-admitted Jake because his white blood count was high.  It turned out to be an infection behind his eye... Like a sinus infection and nothing at all to do with the surgery. It was a scary time. He had horrible migraines (which he had never had before) and he would break out with sweat pouring off his body in a room that was 71 degrees.  The staff at Tufts were amazing. When they released him for the second time on December 22 and said we could fly home... we did just that. We jumped on the first available flight and arrived home around midnight. We were thrilled to be able to enjoy Christmas at home.. YEAH....Jake is doing fabulous. Seriously.
  Yesterday we went to our local cardiologist for a check up.  They did an echocardiogram.  It was funny how excited they were to see the difference.  Jake's septum now measures 22mm.... Huge difference from the 36mm it was when he went in. But I'm not sure what that means for my little guy because normal is between 6-12. I do know there is NO more obstruction and the pressure gradient dropped in half. YEAH. 
   I'm worried... but trying not to be overly worried.  I do remember the cardiothoracic surgeon saying he usually does the surgeries when the septum is between 18-22mm... Jake's septum after the surgery is 22mm???  However I do know...the main point of the surgery is to get rid of the obstruction which is what it did.
   I am also a little concerned because of the recent loss of Ben Breedlove.  My heart breaks for his family. I know, I felt as soon as Jake got the defibrillator that it would all be ok, because the defibrillator was our security blanket. It would keep him alive.  So it's devastating to hear of a young man who wasn't saved by his defibrillator, and makes you aware that there are other things that can happen.
     So we will just take it one day at a time... Appreciating every great day we have...  and he is doing great!